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Sundance(RB) (@sundance6)

Help with Chronic Fatigue Syndrome

Autoimmune Diseases | Last Active: Apr 26 10:19am | Replies (12)

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So Becky, Here I am back again!!! In a little better place! Had my Thursday appt. With my PCP. We had a very open and frank meeting about the last 2 1/2 years. I finally got to admit that he is not sure what I have! We've debated over Lyme Disease before. This time I had facts about its diagnoses, which backed him off of the Lab that did my original test for Lyme did not use the Western Blot Test. He tried to say that they don't do it if you show negative from their test, which I said was absurd.
Then we got into Fibromyalgia! ! He said the Rheumatologist in their hospital system does not deal with it! I said that is strange because Mayo Clinic does as do several others!
We then went into Chronic Fatigue!
He finally said that you can put Fibromyalgia and CFS together, and they replicate each other as far as many symptoms! He somewhat admitted that Lyme has many similarities! When I reminded him of what I have told him before about my teeth hurting and that Lyme was the only one who has that symptom! He just nodded his head!
As You know, because I have said it before, New Mexico is a Third World State as far as the medical services provided! I love where I live and don't want to live anywhere else!
He was quite honest, and we agreed there really no cure for all three once Lyme has progressed. In spite of the ads saying they can diagnose Fibro!
As I've said before he has been a tremendous help dealing with my symptoms. I will be very honest and upfront about his help. Younger doctors would not have done the same.
I take 2 1/2 – 3 Oxycodone a day for principally the headaches and joint pain and an Ambien at night to help with insomnia at night which comes with all three!
We did talk about managing my time and my energy! I did go online and found a great 90-day journal that pretty much covers my day from when I awake and when I go to sleep and how I slept.
As for how many times I have tried to explain to my family, as do many with one of the three diseases, they refuse to acknowledge them.
So that's why Mayo Connect is so important to my Life! So Life goes on! I know I have to watch what I do and acknowledge when I need to jump off of the merry-go-round!
Peace to You!

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Replies to "So Becky, Here I am back again!!! In a little better place! Had my Thursday appt...."

Hi Sundance;
So sorry to hear of your issues. I’ve been chatting in the EBV mono group with mono, fatigue, burning, tingling issues. However I have also been having issues with dizziness sometimes too. I’m adding this info again as I think you should read Anthony Williams books on Lyme and EBV etc. he covers absolutely everything and the diet protocol for it! It has most definitely been a life saver for me. The doctors have NO clue. I’m still waiting on an infectious disease doc appointment after 4 months. My issues went on all last year and finally seeing some improvement. His recent book ‘Cleanse to heal!’ Is in the library or amazon. I hope it helps.